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Follow-Up Care Use and Health Outcomes of Cancer Survivors (FOCUS) Study
Conducted by:
And
CONFIDENTIAL Study I.D. #
INTRODUCTION
Individuals treated for breast, prostate, colorectal, endometrial, and ovarian cancer represent a major portion of the growing population of cancer survivors. Despite this, we know relatively little about the medical follow-up care experiences of this population after completion of cancer treatment. In addition, we are only just beginning to learn about the long-term (chronic) or late (delayed) impact of cancer treatments on individuals' health and well-being. With support from the National Cancer Institute, the Los Angeles County Cancer Surveillance Program and the Northern California Cancer Center are conducting a questionnaire study of survivors of breast, prostate, colorectal, endometrial, and ovarian cancer. You have been selected to participate in this important research study. This information will allow us to identify areas where improvements in quality of care for cancer survivors are needed.
This survey booklet contains questions about your cancer treatment(s), follow-up medical care, health status after cancer, experiences and interactions with your doctors and other health care providers, your satisfaction with the care received, and your current health behaviors and practices. We know of no better way to learn about these issues than to ask cancer survivors themselves.
There are no right or wrong answers, so please respond by giving the answer that best describes your situation. You may find some of the questions to be personal or difficult, and you may not have thought about some issues before. Even if you feel you must skip a question, please indicate this by writing "SKIP" in the left margin, and proceed to the next question. Your answers to other questions will still be important to us and we will appreciate your responses very much.
All of the information you provide is confidential and will not be disclosed to your health care provider or others. The information obtained will be analyzed as grouped data without any personal identification. When you are completing this survey, if any issues concern you about your health, please discuss these with your health care provider. You are also free to contact us by telephone or mail to discuss any issues related to the survey material. If you are from the Los Angeles area and have any questions, please contact: the Los Angeles Site Principal Investigator of the study, Dr. Ann Hamilton, at 323-865-0434, or the Study Coordinator at 323-442-2712. Their address is: FOCUS Study, Los Angeles County Cancer Surveillance Program, 1540 Alcazar St., CHP 204, MC9007, Los Angeles, CA, 90089-9007. If you are from Northern California and have any questions, please contact: the Northern California Site Principal Investigator, Dr. Ingrid Oakley-Girvan at 510-608-5045, or the Study Coordinator Susan Wolff at 510-608-5046. Their address is: Dr. Ingrid Oakley-Girvan (FOCUS Study), Northern California Cancer Center, 2201 Walnut Avenue, Suite 300, Fremont, CA 94538.
We are very grateful to you for the time you will be taking to complete this survey and for helping us to learn how to improve the lives of all cancer survivors. After completing the survey, please mail it back to us in the enclosed postage-paid envelope.
Thank you.
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PLEASE READ THESE INSTRUCTIONS CAREFULLY
GENERAL INSTRUCTIONS
• Answer each question as best you can. Please do not leave any question blank. If you feel you must skip a question, please indicate this by writing "SKIP" beside the question, or by putting an "X" over the question number.
• Please fill in the oval next to you answer completely using blue or black ink.
Example: Fill in ovals completely, like this: Yes Not like this: Yes Or this: Yes
• Please follow any instructions that direct you to the next question.
Example: No GO TO Question A8
• For a question with a line after it, please write the specific information on the line provided.
Example: Other, please specify: cardiologist
• Mark only one response for each question, unless directed to "PLEASE FILL IN THE OVALS FOR ALL THAT APPLY." For those questions, please mark every response choice that applies to your situation.
• When you are asked to provide a date (for example, when you started your cancer treatment), please provide an approximate date if you cannot remember the exact date.
• As much as possible, please try to answer all the questions in one sitting.
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SECTION A. Cancer and Treatment History
/ / A1. Today's date: i Month Day Year
A2. What is your birthdate?: / / Month Day Year
A3. Are you male or female?
Male Female
A4. Have you ever been told by a doctor or other health care professional that you had cancer?
No Please stop and return the questionnaire in the enclosed stamped, pre-addressed envelope.
Yes
A5. When was the first time that a doctor or other health care professional told you that you had cancer?
Month: ________ Year: _______________
A6. What type of cancer were you FIRST diagnosed with? Some individuals may have been diagnosed with more than 1 cancer, or may have experienced a recurrence. In either of
those cases, please mark the box with the name of your FIRST cancer diagnosis:
Breast Prostate Colon or Rectum Ovary Endometrial Other, please specify:
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A7. At any time since you were diagnosed with your FIRST cancer, did a doctor or other health care professional tell you that your FIRST cancer had come back (that is, you had a recurrence)?
No GO TO Question A8 Yes
A7a. IF YES: How many times have you had a recurrence of your FIRST cancer?
One time Two times Three or more times
A7b. What was the approximate date of your most recent recurrence of your FIRST cancer?
Month: ________ Year: _______________
A7c. Have you completed cancer treatment for your most recent recurrence of your FIRST cancer?
No Yes
A8. At any time since you were first diagnosed with cancer, did a doctor or other health care professional tell you that you had developed a second cancer (a second cancer is a cancer that is different from your first cancer, for example, ovarian cancer after breast cancer, or a second cancer in the other breast)?
No GO TO Question A9 Yes
A8a. IF YES: How many times have you had a "second" cancer?
One time Two times Three or more times
A8b. What was the approximate date of your most recent "second" cancer?
Month: ________ Year: _______________
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A8c. Have you completed treatment for your most recent "second" cancer? No Yes
A9. Did you ever receive any surgery as part of your cancer treatment? Please DO NOT consider any biopsy you had or insertion of medication ports such as a Hickman catheter to be surgery.
No GO TO Question A10 Yes
A9a. IF YES: On what part(s) of your body did you have surgery?
One Breast Both Breasts Prostate Colon or Rectum One Ovary Both Ovaries Uterus Lymph Nodes Other, please specify:
A10. Did you ever receive any chemotherapy as part of your cancer treatment? Please include both IV (that is, intravenous) and oral forms of chemotherapy.
No GO TO Question A11 Yes
A10a. IF YES: To the best of your knowledge, what chemotherapy drugs were you given? (PLEASE FILL IN THE OVALS FOR ALL THAT APPLY)
Cytoxan (also known as cyclophosphamide) Adriamycin (also known as doxorubicin) Taxol Fluorouracil Cisplatin (also known as carboplatin) Methotrexate Other, please specify: Do not know the specific ones
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A10b. When was the FIRST time you received chemotherapy? (You do not have to remember exact dates, an approximate date is fine.)
Month: ________ Year: _______________
A10c. When was the LAST time you received chemotherapy? (You do not have to remember exact dates, an approximate date is fine.)
Month: ________ Year: _______________
A11. Did you ever receive any radiation therapy as part of your cancer treatment?
No GO TO Question A12. Yes
A11a. IF YES: When was the FIRST time you received radiation therapy?
Month: ________ Year: _______________
A11b. When was the LAST time you received radiation therapy?
Month: ________ Year: _______________
A12. Did you ever receive or are you currently receiving any medicines to prevent cancer from recurring or to prevent a second cancer (for example, tamoxifen for breast cancer or hormones for prostate cancer). (These are sometimes referred to as 'maintenance'
medicines.)
No Yes, please specify name of this maintenance medicine:
Do not know
A13. To the best of your knowledge, are you now free of cancer (that is, at this time, your cancer is in remission)?
No Yes Do not know
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SECTION B. Follow-Up Care After Cancer
Cancer survivors often see a doctor for follow-up care after their cancer diagnosis. The reasons for this care could include getting follow-up medical tests, treating symptoms and treatment related side effects, as well as getting additional therapy. These next questions are about your experience with getting follow-up care after your cancer treatment.
B1. At any time since you were first diagnosed with cancer, were you ever told by any of the doctors that treated you for cancer that you needed regular follow-up care and monitoring even after cancer treatments were over?
No GO TO Question B2 Yes
B1a. IF YES: Were the reasons for receiving this follow-up care discussed with you?
No, did not discuss GO TO Question B2 Yes, discussed somewhat Yes, discussed in detail
B1b. IF YES: Please mark all the reasons for follow-up care after cancer that your doctor discussed with you. (PLEASE FILL IN OVALS FOR ALL THAT APPLY)
To check for a recurrence of your original cancer. To receive additional treatment for your cancer if needed. To determine if you have developed any health problems as a result of your cancer or its treatment.
To receive treatment for any symptoms or side effects of treatment. To receive a routine physical exam. To receive any screening test for other cancers (including such tests as a mammogram or Pap smear for women, colonoscopy, sigmoidoscopy, stool check for blood, or PSA test or digital rectal exam (for men)) To receive test or exams for non-cancer diseases such as diabetes, heart disease, hypertension, or To obtain a referral to other specialist(s). Other, please specify:
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B1c. Which of the following reasons do you consider to be the most important one for receiving follow-up care after cancer? (SELECT ONLY ONE)
To check for a recurrence of your original cancer. To receive additional treatment for your cancer if needed. To determine if you have developed any health problems as a result of your cancer or its treatment.
To receive treatment for any symptoms or side effects of treatment. To receive a routine physical exam. To receive any screening test for other cancers (including such tests as a mammogram or Pap smear for women, colonoscopy, sigmoidoscopy, stool check for blood, or PSA test or digital rectal exam (for men). To receive test or exams for non-cancer diseases such as diabetes, heart disease, hypertension, or arthritis. To obtain a referral to other specialist(s). Other, please specify:
B2. Has a doctor or health care professional ever discussed with you what late or long-term side effects of cancer treatment (chemotherapy drugs, radiation or other treatments) you may experience over time?
No, did not discuss Yes, discussed somewhat Yes, discussed in detail
B3. At the completion of your cancer treatment, did you receive a written summary from your doctor(s) that mentioned details of the treatment you had received and provided other important details regarding your cancer care?
GO TO Question B4 No
Yes B3.a. IF YES: Can you easily find the summary if needed? Not sure No
Yes Not Sure
GO TO Question B5
B4. Would you have liked to receive a written summary from the doctor(s) treating you for cancer regarding the cancer treatment(s) you had received and other details of your cancer care?
No Yes Not sure
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B5. About how many months or years has it been since you spoke by telephone or in person with the doctor(s) at the clinic or hospital where you received all or most of your cancer treatment for your cancer, or received a checkup at the clinic or hospital where you were first treated for cancer?
Within the past year (12 months) Between 1 year and less than 2 years ago Between 2 years and less than 3 years ago Between 3 years and less than 4 years ago 4 years ago or more
Next we are asking about any follow-up care you received to specifically monitor your cancer and any subsequent effects from it or from your treatment. We refer to this as your cancer-related follow-up care. Some survivors see the same doctor for their regular medical care and cancer-related follow-up care, while others see different doctors.
B6. Since you were diagnosed with cancer, have you ever seen a doctor for cancer-related follow-up care?
No Yes
GO TO Question B7
B6a. IF NO, What are the main reasons you did NOT see a doctor for cancer-related follow-up care? (PLEASE FILL IN OVALS FOR ALL THAT APPLY)
I felt I didn't need follow-up care My doctor(s) told me I didn't need follow-up care Cost too much OR insurance didn't cover it Didn't know a good cancer doctor It made me anxious or worried Getting to the doctor was hard I didn't have the time for it It was too difficult to schedule an appointment Child care was a problem I didn't know about it Other, please specify:
GO TO Question C1
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B7. Below are some opinions and feelings that cancer survivors have expressed about cancer-related follow-up care. Please mark whether you agree or disagree with the following statements about cancer-related follow-up care visits?
Strongly Agree Agree
Neither Agree nor Disagree Disagree Strongly
Disagree
a. Regular cancer follow-up visits give me a feeling of security
b. I always get nervous before my cancer follow-up visit
c. I always feel reassured after my cancer follow-up visit
d. I don't sleep as well in the week before my cancer follow-up visit
e. I usually postpone new plans till after the cancer follow-up visit
f. Cancer follow-up visits have more advantages than disadvantages
g. I would worry more about my cancer if there were no follow-up visits
h. I normally dread my cancer follow-up visits
i. I would rather have cancer follow-up visits less frequently
j. I believe regular follow-up care will help me live longer after cancer
k. I believe regular follow-up care will me me live better (with higher quality of life) after cancer
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Your Follow-Up Care over the PAST 2 YEARS These questions are about your cancer related follow-up care in the past two years only.
B8. In the past 2 years, did you see any doctor specifically for cancer-related follow-up care? This could either be a cancer specialist or some other doctor.
No B8a. IF NO, What are the main reasons you did NOT see a doctor for cancer-related follow-up care in the past 2 years? Yes (PLEASE FILL IN OVALS FOR ALL THAT APPLY)
I felt I didn't need follow-up care My doctor(s) told me I didn't need follow-up care Cost too much OR insurance didn't cover it Didn't know a good cancer doctor It made me anxious or worried Getting to the doctor was hard I didn't have the time for it It was too difficult to schedule an appointment Child care was a problem I didn't know about it Other, please specify:
B8b. When was the last time you saw a doctor for a cancer-related follow-up care?
Month: ________ Year: _______________
GO TO Question B20
B9. In the past 2 years, what were the reasons you saw any doctor for cancer-related follow-up care? (PLEASE FILL IN OVALS FOR ALL THAT APPLY)
To check for a recurrence of your original cancer To receive additional treatment for your cancer if needed To determine if you have developed any health problems as a result of your cancer or its treatment
To receive treatment for any symptoms or side effects of treatment To receive a routine physical exam To receive any screening test for other cancers (including such tests as a mammogram or Pap smear for women, colonoscopy, sigmoidoscopy, stool check for blood, or PSA test or digital rectal exam (for men)) To receive test or exams for non-cancer diseases such as diabetes, heart disease, hypertension, or arthritis. To obtain a referral to other specialist(s) Other, please specify:
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B10. In the past 2 years, how many times did you see any doctor for cancer-related follow-up care?
1 time 2 times 3 times 4 times 5 to 9 times 10 or more times
B11. In the past 2 years, how many different doctors did you see for cancer-related follow-up care?
One Two Three Four Five or more Not sure
B12. What were the specialties of the doctors you saw for cancer-related follow-up care in the past 2 years? (PLEASE FILL IN OVALS FOR ALL THAT APPLY)
Primary care (such as internal medicine, family practice) Cancer specialist (such as medical, radiation, surgical or gynecologic oncologist) Obstetrician / Gynecologist (Ob-Gyn) Urologist Gastro-Enterologist Other, please specify: ___________________________________________ Not sure
B13. When did you last see any doctor for cancer-related follow-up care?
Less than 4 weeks ago 1 to 3 months ago 4 to 6 months ago 7 to 12 months ago More than 1 year ago
B14. Where did you usually see a doctor for cancer-related follow-up care? At the doctor's stand-alone office At a general medicine clinic, not located at a hospital At a specialty clinic or center, not located at a hospital At a hospital-based clinic At the emergency room Other Not sure / Do not know
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B15. In the past 2 years, did your cancer-related follow-up care doctor(s) order any medical tests for any reason?
No GO TO Question B17 Yes
B16. In the past 2 years, when your cancer-related follow-up care doctor(s) order any medical tests:
Never Sometimes Usually Always
a. how often was the need for or purpose of these tests explained to you in a way you would understand?
b. how often did you get the test results in a timely manner?
c. how often were the test results explained to you in a way you could understand?
B17. In the past 2 years, did you experience any symptoms that you thought might have been related to your cancer or its treatment?
No GO TO Question B19 Yes
B18. In the past 2 years, how often did your cancer-related follow-up care doctor(s) give you the help you wanted to take care of the symptoms or side effects that you were
experiencing?
Never Sometimes Usually Always
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B19. In the past 2 years, how often did your cancer-related follow-up care doctor(s) ...
Some-Never Usually Always times
a. listen carefully to you?
b. explain things in a way you could understand?
c. show respect for you had to say?
d. encourage you to ask all the cancer-related questions you had?
e. make sure that you understood all the information he or she gave you?
f. spend enough time with you?
g. give you as much cancer-related information as you wanted?
h. involve you in decisions about your medical care as much as you wanted?
B20. Overall, how yould you rate the quality of the cancer-related follow-up care that you received in the past 2 years?
Poor Fair Good Very Good Excellent
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Your Main Cancer-Related Follow-Up Care Doctor These next questions focus on ONE specific cancer-related follow-up care doctor: B21. Of all the doctors you have seen for cancer-related follow-up care since you were
diagnosed, is there any one doctor you consider to be your main doctor for cancer-related follow-up care?
No GO TO Question C1 Yes
B21a. IF YES: Which doctor is this? (SELECT ONE ONLY) Primary care (such as internal medicine, family practice Cancer specialist (such as medical, radiation, surgical or gynecologic oncologist)
Obstetrician / Gynecologist (Ob-Gyn) Urologist Gastro-Enterologist Other, please specify: Not sure
B21b. Is this doctor a male or a female?
Male Female
B21c. Which of the following best describes your doctor? Your doctor is ... (PLEASE FILL IN OVALS FOR ALL THAT APPLY)
Hispanic or Latino White African-American Asian Other Not sure / Do not know
B21d. Where do you usually see this doctor?
At the doctor's stand-alone office At a general medicine clinic, not located at a hospital At a specialty clinic or center, not located at a hospital At a hospital-based clinic At the emergency room Other Not Sure / Don't know
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B21e. For how many months or years have you been going to this doctor for any kind of medical care?
Less than 1 year 1 to 2 years More than 2 years but less than 5 years 5 or more years
B21f. Is this the same doctor who you saw for your initial cancer treatment? No Yes
Section C: Preferences For Cancer-Related Follow-Up Care For the following questions, we would like you to think about how you would prefer to make medical decisions about your cancer-related follow-up care, IF they were to be made AT THIS TIME.
C1. From the following five options, please mark the one that best describes your preference for how medical decisions about your cancer-related follow-up cancer care should be
made. Such decisions could include what follow-up medical tests you should get to check for cancer or other illnesses, how your symptoms and side effects should be treated, whether existing medications need dosage changes or need to be stopped, etc.
I would prefer to make the decisions with little or no input from my doctor(s) I would prefer to make the decisions after seriously considering my doctor's opinion I would prefer that my doctor(s) and I make the decisions together I would prefer my doctor(s) to make the decisions after serisouly considering my opinion I would prefer my doctor(s) to make the decisions with little or no input from me
C2. If at this time, you and your cancer-related follow-up care doctor(s) had to make any medical decisions about your follow-up cancer care, how confident are you that you would be able to…
Not at All Very Completely A Little Somewhat Confident Confident
a. Take part in a detailed discussion with your doctor about the different
available options b. Let your doctor know if you had any
concerns or questions about his or her recommendation
c. Tell your doctor about the option you would prefer
d. Work out any differences of opinion with your doctor, should they exist
e. Take responsibility for making the final decision
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Your Views Regarding Your Ideal Follow-Up Care Next are some questions regarding your perceptions and thoughts about your ideal cancer-related follow-up care doctor, the setting in which you wish to receive such care, and the services, tests, procedures you may want to receive at these visits.
C3. Who do you personally feel would be your ideal cancer-related follow-up care doctor? (SELECT ONE ONLY)
Cancer Specialist / Oncologist Primary Care Doctor Other, please specify: _________________________________________ Not sure
C3a. What are the most important reasons why this person would be your ideal follow-up care doctor? (SELECT UP TO THREE REASONS)
Knowledge or expertise Caring Attitude Convenient location Ease in making appointments Communication skills Other, please specify: Not sure
C4. Would you ideally want this doctor to be the same doctor who you saw for your initial cancer treatment?
No Yes
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C5. What examinations, test, procedures, would you ideally want to receive in each follow-up care visit? (PLEASE FILL IN OVALS FOR ALL THAT APPLY)
Consultation/conversation with your doctor regarding your health since you last saw him/her General physical examination Laboratory tests Tumor Markers (e.g., PSA, CA 15-3, CEA, CA-125) X-Rays Bone Scans CT scan or MRI Ultrasound Any screening test for other cancers (including such tests as a mammogram or Pap smear for women, colonoscopy, sigmoidoscopy, stool check for blood, or digital rectal exam (for men))?
Tests or exams for non-cancer diseases such as diabetes, heart disease, hypertension, or arthritis?
Referral to other specialists Other, please specify: Not sure
C6. Where would you ideally like to go for your cancer-related follow-up care visits?
To the doctor's stand-alone office To a general medicine clinic, not located at a hospital To a specialty clinic or center, not located at a hospital To a hospital-based clinic To the emergency room Other Not sure / Don't know
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SECTION D. Other Medical Care The following questions are about other medical care that you may have received in addition to OR instead of cancer-related follow-up care:
D1. For your non-emergency care, do you have a primary care physician or a place you go for routine medical care?
No Yes
D2. During the past 2 years, did you go to a doctor other than your cancer-related follow-up care doctor(s) for a "routine medical check-up" or other medical problems?
GO TO Question D3 No Yes
D2a. IF YES: Were any of your "routine medical check-up" visits or visits for other medical problems during the past 2 years related to health problems that you think might have resulted from your cancer or its treatment?
No Yes Not sure
D2b. Approximately how many "routine medical check-up visits" or visits for other medical problems did you have during the past 2 years?
One Two Three Four Five or more Not sure
D2c. What is the specialty of the doctor you saw most often for your "routine medical check-up" or other medical problems? (SELECT ONE ONLY)
Primary care (such as internal medicine, family practice Cancer specialist (such as oncologist, for care not previously mentioned) Obstetrician / Gynecologist (Ob-Gyn) Urologist Other, please specify: Not sure
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D2d. Did the doctor you saw most often for your "routine medical check-up" or other medical problems refer you to another doctor(s)?
GO TO Question D3 No Yes
D2e. IF YES, What type of doctor(s) were you referred to? (PLEASE FILL IN OVALS FOR ALL THAT APPLY)
Oncologist Obstetrician / Gynecologist (Ob-Gyn) Cardiologist Rheumatologist Endocrinologist Urologist Psychologist / Psychiatrist Other, please specify:
D3. During the past 2 years, how difficult has it been to get a referral to a specialist if you needed one?
Not at all difficult A little difficult Somewhat difficult Very difficult I did not need to see a specialist (e.g., cardiologist, urologist, etc.) I did not need a referral
D4. In the past 2 years, did any of your doctors (including your cancer-related doctor(s) as well as regular care doctor(s)) or someone from your doctor's office or clinic …
Not Don't Needed/Not
No Yes Know Applicable
a. talk with you about specific things you could do to improve your health or prevent illness?
b. give you the help you wanted to make changes in your habits or lifestyle that would improve your health or prevent illness?
c. talk with you about how much or what kind of foods you eat?
d. talk with you about how much or what kind of exercise you get?
e. talk with you about your smoking?
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D5. When was the last time you had the following screening tests?
Within the More than Never past 2 2-5 years 5 years had this Not years ago ago test sure
a. Colonoscopy (this is an examination of the rectum and entire colon using a lighted instrument called a colonscope)
b. Sigmoidoscopy (this is an examination of the rectum and lower colon using a lighted instrument called a sigmoidoscope)
c. Stool check for blood or Fecal Occult Blood Test (FOBT)
For men only: d. PSA test
For women only: Not required e. Mammogram
f. Pap Smear
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D6. At any time since you were first diagnosed with cancer, have you used any of the following complementary and alternative therapies?
If yes: No Yes
Have you used them in the past
year?
a. Special diets such as mostly vegetarian or low fat
No Yes
b. Movement or physical therapies such as yoga, tai chi, massage, chiropractic, or electromagnetic therapy
No Yes
c. High dose or mega vitamins (DO NOT include 1-a-day multivitamins), nutritional supplements, or herbal remedies
No Yes
d. Homeopathy (small doses of drugs that in a healthy person would produce symtpoms like those of the disease)
No Yes
e. Mind/body therapies such as guided imagery/visualization, biofeedback, meditation, relaxation techniques, hypnosis/hypnotherapy, energy healing, therapeutic touch, or music therapy
No Yes
f. Oriental therapies such as acupuncture, acupressure, Qigong, or Shiatsu No Yes
g. Self-help or support groups (either face-to-face or on the Internet) No Yes
h. Psychological therapy or counseling from a psychologist, psychiatrist, social worker, or any other mental health professional
No Yes
i. Faith healing, laying on of hands, or any other spiritual or religious group experience
No Yes
j. Personal prayer or personal spiritual healing No Yes
k. Other, please specify: No Yes
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D7. What were the major reasons why you used any of these therapies discussed above in question D6? (PLEASE FILL IN OVALS FOR ALL THAT APPLY)
I didn't use any of the above therapies GO TO Question E1 To relieve symptoms or any treatment-related side effects (such as pain, nausea, fatigue, anxiety, depression, or other similar symptoms/side-effects) To relieve stress To treat my cancer To prevent my cancer from coming back To help deal with a medical condition other than cancer, please specify:
To get support and cancer-related information Other, please specify:
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Section E. Health Problems Experienced in the PAST 12 MONTHS Have you experienced any of the following problems in the PAST 12 MONTHS?
No Yes
E1. Shortness of breath or difficulty breathing
E2. Ankle swelling
E3. Problems with memory, attention, or concentration
E4. Frequent headaches or migraines
E5. Numbness or tingling E6. Dizziness, vertigo or problems with balance or equilibrium
E7. Tremors (shaking of fingers or hands), or weakness in arms or legs
E8. Frequent cough
E9. Frequent or severe heartburn, indigestion, or stomach pain
E10. Blood in the urine
E11. Ringing in the ears E12. Blurred or double vision, or dry eyes
E13. Dry mouth
E14. Sensitivity (of teeth) to hot or cold, or other dental problems (e.g., cavities, bleeding gums)
E15. Joint pains
E16. Leg or muscle cramps
E17. Frequent back or neck pain
E18. Unexplained weight loss
E19. Unexplained weight gain
E20. Frequent fevers
E21. Lack of restful sleep
E22. Frequent tiredness or fatigue
E23. Dry skin or frequent itching
E24. Night or cold sweats
E25. Hot flashes E26. Abdominal Bloating
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Section F. Other Medical Conditions Has a doctor or other health care professional EVER told you that you had any of the following conditions?
If yes: No Yes
Did you have this condition before
your cancer diagnosis?
F1. Irregular heartbeat or palpitations or frequent skipped beats
No Yes
F2. Heart failure or congestive heart failure No Yes
F3. Weak heart muscle (cardiomyopathy) No Yes
F4. Heart attack or myocardial infarction No Yes
F5. Chest pain or angina No Yes
F6. High blood pressure (hypertension) No Yes
F7. Fluid around your heart (pericarditis) No Yes
F8. Stiff or leaking heart valves No Yes
F9. Blood clots in the veins of the legs or in the lungs No Yes
F10. Stroke or brain hemorrhage No Yes
F11. Epilepsy No Yes
F12. Seizures or convulsions No Yes
F13. Nerve pain (neuropathy) No Yes
F14. Chronic lung disease or bronchitis or emphysema No Yes
F15. Asthma No Yes
F16. Inflammation of lining of the lungs (pleurisy) No Yes
F17. Scarring of the lung (lung fibrosis) No Yes
F18. Pneumonia No Yes
F19. Medical tests indicating abnormal liver function
No Yes
F20. Liver disease or cirrhosis No Yes
F21. Inflammatory bowel disease or colitis or Crohn's disease
No Yes
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Has a doctor or other health care professional EVER told you that you had any of these conditions?
If yes: No Yes
Did you have this condition before
your cancer diagnosis?
F22. Gallbladder problems, such as gallstones No Yes
F23. Kidney stones No Yes
F24. Kidney or bladder infections No Yes
F25. Overactive thyroid gland (HYPERthyroid) No Yes
F26. Underactive thyroid gland (HYPOthyroid) No Yes
F27. Diabetes or high blood sugar No Yes
F28. Osteoporosis or brittle bones No Yes
F29. Weakening or degeneration of bones of hip or shoulder joint (avascular necrosis) No Yes
F30. Partial or complete deafness in one or both ears No Yes
F31. Cataracts No Yes
F32. Problems with the retina No Yes
F33. Arthritis or rheumatism No Yes
F34. Swelling of arm or leg due to collection of lymph fluid (lymphedema) No Yes
F35. Anemia No Yes
F36. Shingles No Yes
F37. Sciatica No Yes
F38. Depression or anxiety No Yes
F39. Reduced or limited fertility (potential difficulty in having children of your own) No Yes
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F40. Do you have any other medical condition(s) not mentioned so far? Please specify the condition(s) below and whether you had the condition(s) before your cancer diagnosis: (Please limit your responses to the 2 most important other conditions, if you have more than two)
Did you have this condition Specify other conditions: before your cancer diagnosis? 1) No Yes
2) No Yes
F41. Are any of your current daily activities limited by any health condition(s) selected in questions F1 to F40?
GO TO I don't have any medical condition(s) listed in F1 to F40 Question F43 No, not limited at all Yes, limited somewhat Yes, limited a lot
F42. From the conditions you listed in F1 to F40, please list below the top 1 to 3 you feel are causing you the most problems currently.
None are causing me problems at this time
Conditions causing the most problems for me right now are:
1)
2)
3)
F43. During the past year, did you take any of the following NON-prescription pain medicines for at least 30 days during the year?
No Yes Not sure
a. Aspirin
b. IBUPROFEN (also known as Motrin or Advil)
c. NAPROSYN (also known as Aleve) d. ACETAMINOPHEN (also known as Tylenol)
F44. In the past year did you take any prescription medicine?
No GO TO Question G1 Yes
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F45. During the past year, did you take any of the following prescription medicines for at least 30 days during the year?
Not No Yes sure
a. ANTIBIOTICS such as amoxicillin, bactrim, erythromycin, penicillin or others
b. FEMALE HORMONES (ESTROGENS OR PROGESTERONES) such as Estrace, Estraderm patch, Premarin, Provera, Prempro, estrogen cream, Medroxyprogesterone or others
c. OTHER HORMONES (such as Delatesteral, Testosterone cypionate, enanthate or others)
d. THYROID MEDICATIONS such as L-thyroxin, Levothyroid, Levothyroxin, Synthroid or others
e. DIABETES MEDICATION such as Insulin, Diabinase, Glucotrol, Micronase, Orinase, Tolinase or others
f. MUSCLE RELAXANTS such as Baclofen, Flexeril, Valium, Chlorzoxazone (Paraflex) or others
g. PRESCRIBED PAIN MEDICINES such as Tylenol with codeine (Tylenol #3), Ansaid, Disaicid, Feldene, Florecet or others
h. ANTI-EPILEPTIC (ANTI-SEIZURE) DRUGS such as Dilantin, Phenobarbital, Depakane, Tegretol (Carbamazepine), Klonipen, Promidone (Mysoline), Zarontin or others
i. HIGH BLOOD PRESSURE MEDICINE OR HEART MEDICINE such as Atenolol (Tenoretic), Captopril, Digoxin (Lanoxin), Lasix (Furosemide), Inderal, Lethyl-Dopa, Dyazide (Triamterene), Procardia, Vasolec or others
j. PRESCRIBED ANTACIDS (for excess stomach acid or ulcers) such as Tagomet (Cimetidine), Zantac (Ranitidine), Pepcid (Famotidine) or others
k. ANTIDEPRESSANTS OR OTHER PRESCRIBED DRUGS FOR DEPRESSION OR OTHER MOOD DISORDERS such as Elavil, Prozac, Paxil, Zoloft, Navane, Ritalin or others
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Section G. Information About Health Related Topics
G1. Little is known about the information needs of long-term cancer survivors. At this time, would you like more information about any of the following health-related topics?
Health Related Topics Not No Yes Sure
a. Cancer-related follow-up tests/procedures that you should have
b. Symptoms that should prompt you to call your doctor
c. What late and long-term side effects of cancer treatment to expect
d. Managing your anxiety about recurrence
e. Staying physically fit
f. Nutrition and diet g. Cancer risks to your family
h. Dealing with sexual problems
i. Having children after cancer treatment
j. Complementary and alternative treatments
k. Medical advances in cancer treatment
l. Getting or retaining health, life, or disability insurance after cancer
m. Any other need, please specify:
G2. How confident are you that you could get advice or information related to cancer if you needed it at this time?
Not at all confident A little confident Somewhat confident Very confident Completely confident
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Section H. General Health H1.* In general, would you say your health is:
Excellent Very good Good Fair Poor
H2. The following questions are about activities you might do during a typical day. Does your health now limit you in these activities? If so, how much?
Yes, limited
a lot
Yes, limited a
little
No, not limited at all
a. Moderate activities, such as moving a table, pushing a vacuum cleaner, bowling, or playing golf
b. Climbing several flights of stairs
H3. During the past 4 weeks, how much of the time have you had any of the following problems with your work or other regular daily activities as a result of your physical health?
Most All of Some of of the the time the time time
A little None of of the the time time
a. Accomplished less than you would like
b. Were limited in the kind of work or other activities
H4. During the past 4 weeks, how much of the time have you had any of the following problems with your work or other regular daily activities as a result of any emotional problems (such as feeling depressed or anxious)?
Most All of Some of of the the time the time time
A little None of of the the time time
a. Accomplished less than you would like
b. Did work or other activities less carefully than usual
* Questions H1-H7 are from SF-12v2 Standard, US Version 2.0. SF-12v2™ Health Survey ©1994, 2002 by QualityMetric Incorporated and Medical Outcomes Trust - All Rights Reserved. SF-12 is a registered trademark of Medical Outcomes Trust
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H5. During the past 4 weeks, how much did pain interfere with your normal work (including both work outside the home and housework)?
Not at all A little bit Moderately Quite a bit Extremely
H6. These questions are about how you feel and how things have been with you during the past 4 weeks. For each question, please give the one answer that comes closest to the way you have been feeling.
How much of the time during the past 4 weeks…
Most All of Some of of the the time the time time
A little None of of the the time time
a. Have you felt calm and peaceful?
b. Did you have a lot of energy?
c. Have you felt downhearted and depressed?
H7. During the past 4 weeks, how much of the time has your physical health or emotional problems interfered with your social activities (like visiting friends, relatives, etc.)?
All of the time Most of the time Some of the time A little of the time None of the time
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Intimate Relationships
Although the questions in this section are sensitive and personal, they are important in determining how cancer and its treatments may have affected your sexual functioning. Please be assured that your responses to these questions will remain confidential.
H8. In the past 4 weeks, how big a problem did you consider your sexual functioning to be? No problem Very small problem Small problem Moderate problem Big problem
H9. In the past 4 weeks, how satisfied were you with your sex life?
Not at all satisfied A little satisfied Somewhat satisfied Very much satisfied Completely satisfied
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Section I. Health Appraisal And Expectations
I1. How often do you worry that your cancer may come back or get worse? Never Rarely Sometimes Often All of the time
I2. Below is a list of feelings, attitudes, and behaviors that you may have experienced during the past week. For each of the following items, please mark the one response that best describes how often you had that experience during the past week. (FILL IN ONLY ONE OVAL FOR EACH LINE)
During the past week: Rarely or none Occasionally or
of the time Some or a little a moderate All of the (less than of the time amount of time time
1 day) (1-2 days) (3-4 days) (5-7 days)
a. I was bothered by things that usually don't bother me
b. I had trouble keeping my mind on what I was doing
c. I felt depressed
d. I felt that everything I did was an effort
e. I felt hopeful about the future
f. I felt fearful
g. My sleep was restless
h. I was happy
i. I felt lonely
j. I could not "get going"
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I3. Please tell us how much you agree or disagree with the following statements:
Strongly Strongly disagree Disagree Neutral Agree agree
a. In uncertain times, I usually expect the best
b. If something can go wrong for me, it will
c. I'm always optimistic about my future
d. I hardly ever expect things to go my way
e. I rarely count on good things happening to me
f. Overall, I expect more good things to happen to me than bad
I4. To what extent do you feel you have control over…
No Moderate A little control amount control at all of control
A great Complete deal of
control control
a. Your emotional responses to your cancer (such as worrying, feeling anxious, feeling depressed)
b. The physical side effects of your cancer and its treatment (such as feeling pain, tiredness)
c. The kind of follow-up care you receive for your cancer
d. The course of your cancer (that is, whether your cancer will come back, get worse, or you will develop a different type of cancer)
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Section J. Social Support Available to You
J1. From the following options, please mark the one person who is most likely to provide you help with day to day activities if you needed this?
(PLEASE SELECT ONLY ONE)
Your child (son or daughter) Your partner (spouse or significant other) Your sibling (brother or sister) Your parent (mother or father) Your friend Other, please specify:
J2. About how many close friends and close relatives do you have (people you feel at ease with and can talk to about what is on your mind)?
None One Two Three Four Five or more
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J3. People sometimes look to others for companionship, assistance, or other types of support. How often is each of the following kinds of support available to you if you need it?
A little Most None of Some of All of of the of the the time the time the time time time a. Someone to help you if you were
confined to bed
b. Someone to take you to the doctor of you needed it
c. Someone to have a good time with
d. Someone to give you information to help you understand a situation
e. Someone to confide in or talk to about yourself or your problems
f. Someone who hugs you g. Someone to get together with for
relaxation
h. Someone to prepare your meals if you were unable to do it yourself
i. Someone to help with daily chores if you were sick
j. Someone to turn to for suggestions about how to deal with a personal problem
k. Someone who understands your problems
l. Someone to love you and make you feel wanted
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Section K. Women's Health
If you are MALE, GO TO Question L1.
K1. At the time you were first diagnosed with cancer, what was your menstrual status? GO TO
I hadn't had a menstrual period for at least 12 months Question K4 I was having a menstrual period every month I was having a menstrual period once every few months
K2. At this time, what is your menstrual status? GO TO
I hadn't had a menstrual period for at least 12 months Question K4 I was having a menstrual period every month I was having a menstrual period once every few months
K3. Since you were first diagnosed with cancer, how has your menstrual cycle length, or menstrual flow changed? (PLEASE FILL IN OVALS FOR ALL THAT APPLY)
My menstrual flow got lighter My menstrual flow got heavier My menstrual flow got more variable and/or unpredictable The length of my menstrual cycle got shorter The length of my menstrual cycle got longer The length of my menstrual cycle got more variable and/or unpredictable Other, please specify:
K4. Have you ever had any gynecologic (female) surgery? No GO TO Question L1 Yes
K4a. IF YES, what type of surgery did you have? Removal of the uterus or womb only (hysterectomy) Removal of ovaries only (oophorectomy) Removal of the both the uterus and ovaries Removal of the uterus or womb, but unsure about removal of ovaries Other, please specify:
K4b. When did you have this surgery?
Before my cancer diagnosis After my cancer diagnosis
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Section L. Health Behaviors
L1. How tall are you without shoes? ______ feet ______ inches
L2. What is your current weight? ______ lbs
L2a. Approximately what was your weight a year before you were first diagnosed with cancer?
_______ lbs
L2b. Approximately, what was your weight when you were age 20?
_______ lbs
L3. Do you participate in any regular activity or program (formal or your own design) to improve or maintain your physical fitness? (By regular we mean you do the activity at least once a week.)
No Yes
L4. In the past 4 weeks, did you get regular vigorous exercise (that is, at least once a week) through activities such as running, aerobics, heavy yard work, tennis, or any other activity that causes large increases in breathing or heart rate?
No GO TO Question L5 Yes
L4a. IF YES: In the past 4 weeks, how many times each week did you do such activities?
Once 2 to 4 times 5 to 7 times 8 to 10 times 11 or more times
L4b. On an average, how many minutes did you do such activities each time? Under 10 minutes 10 to 19 minutes 20 to 29 minutes 30 to 59 minutes 60 minutes or more
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L5. In the past 4 weeks, did you get regular moderate exercise (that is, at least once a week) through activities such as walking, playing golf, gardening, or any other activity that causes small increases in breathing or heart rate?
No GO TO Question L6 Yes
L5a. IF YES: In the past 4 weeks, how many times each week did you do such activities?
Once 2 to 4 times 5 to 7 times 8 to 10 times 11 or more times
L5b. On an average, how many minutes did you do such activities each time? Under 10 minutes 10 to 19 minutes 20 to 29 minutes 30 to 59 minutes 60 minutes or more
L6. Have you smoked at least 100 cigarettes in your entire lifetime? No GO TO Question L7 Yes
L6a. IF YES: Did you smoke cigarettes at the time you were first diagnosed with cancer?
Yes, I smoked daily Yes, I smoked some days a month No, I did not smoke at the time of my cancer diagnosis
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L6b. Do you currently smoke?
No L6c. IF NO: When did you quit smoking? 1 to 6 months ago 7 to 12 months ago 1 to 4 years ago 5 to 9 years ago 10 or more years ago
Yes L6d. IF YES: How often do you smoke? Every day Some days
L6e. How many packs of cigarettes do you usually smoke/day?
<1 pack/day 1-2 packs/day >2 packs/day
L7. Have you had more than 10 drinks of alcohol in your life? (A drink means a can of beer, a glass of wine, a wine cooler, a shot of hard liquor, or a mixed drink that has a shot of hard liquor in it.)
No GO TO Question M1 Yes
L7a. IF YES: On how many of the past 14 days did you have a beer, glass of wine, whisky, or any other alcoholic drink?
None 1 to 3 days 4 to 6 days 7 to 9 days 10 to 12 days 13 to 14 days
L7b. On the days that you did drink during the past 14 days, how many drinks per day, on average did you have?
1 to 2 drinks 3 to 4 drinks 5 to 9 drinks 10 or more drinks
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Section M. Impact of Cancer M1. Looking back, since the time you were first diagnosed with cancer, how much of an
impact has cancer and its treatments had on the following areas of your life?
Very Does not negative apply impact
Somewhat Somewhat Very No negative positive positive impact impact impact impact a. Your education plans
b. Your work life or career
c. Your ability to date people
d. Your desire to have children
e. Your ability to have children
f. Your relationship with your spouse/partner
g. Your sex life h. Your relationship with your
children
i. Your relationship with other family members and friends
j. Your participation in social activities
k. Your financial situation
l. Your diet
m. Your exercise activities
n. Your smoking of tobacco o. Your alcohol consumption
p. Your retirement plans q. Your ability to get or retain
health, life, or disability insurance
r. Your religious or spiritual beliefs
s. Your ability to enjoy life
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Section N. Background Information
N1. What is the highest level of formal education you have completed? Less than high school High school graduate or GED Some college or technical / vocational school College graduate Some graduate school Graduate degree
N2. Do you consider yourself to be … Hispanic or Latino? NOT Hispanic or Latino?
N3. Which of the following best describes your race? (PLEASE FILL IN OVALS FOR ALL THAT APPLY)
American Indian or Alaska Native Asian Black or African-American Native Hawaiian/ Other Pacific Islander White
N4. What is your current marital status? Married or living as married Divorced Separated Widowed Single (never married)
N5. Who lives with you currently, at least some of the time? (PLEASE FILL IN OVALS FOR ALL THAT APPLY)
I live alone Spouse or significant other Children under 18, please specify:
One Two Three Four Five or more Children 18 or older, please specify:
One Two Three Four Five or more One or both parents Other relatives, please specify:
One Two Three Four Five or more Friends or roommates Other, please specify:
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N6. How many people do you have living near you that you can count on for help in times of trouble or difficulty, such as, to watch over children or pets, to give rides to the hospital or store, or to help if you are sick?
0 1 2 3 to 5 6 to 9 10 or more
N7. What best describes your current employment status? Working full-time Working part-time Full-time homemaker or family caregiver Retired Student Unemployed Other, please specify:
N8. Which of the following categories best describes your total household income, before taxes, from all sources past year?
Less than $20,000 $20,000 to $29,999 $30,000 to $39,999 $40,000 to $59,999 $60,000 to $74,999 $75,000 to $99,999 $100,000 to $119,999 $120,000 or more
N9. During the past 4 weeks, did you have adequate financial resources to meet the daily needs of you and your family?
No Yes
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N10. Do you currently have any form of health insurance coverage?
No GO TO Question O1 Yes
N10a. IF YES: What type of insurance do you have? (PLEASE FILL IN OVALS FOR ALL THAT APPLY)
PPO HMO or managed care Medicare or Medical Medicaid Military (VA or CHAMPUS) Other, please specify: Do not know
N10b. How is this health insurance provided? (PLEASE FILL IN OVALS FOR ALL THAT APPLY)
Through my employer Through my spouse's or parent's policy Through a private policy I purchased Through the government Other, please specify:
N10c. During the past 2 years how difficult has it been to deal with your Health Insurance company or HMO?
Not at all difficult Little difficult Somewhat difficult Very difficult Did not need to interact with medical insurance company
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Section O. Additional Comments
O1. In looking back, what things do you think have helped you the most during the experience of becoming a cancer survivor?
O2. Finally, if you have any comments about this survey or would like to share any concerns or problems related to or due to your cancer that we did not cover in this survey, please feel free to do so below.
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THANK YOU for taking the time to fill out this survey.
Please return the survey in the enclosed postage-paid envelope.
May we contact you in the next few months to participate in a focus group to discuss these issues further?
Yes, you may contact me at:
No, I prefer not to be contacted (telephone number)
